The concept of a communal type of privacy shared by interconnected social groups has wide applications in the healthcare field, specifically in genetic testing and genetic data privacy (Pyrrho, Cam...

The need for greater privacy protections in the United States has never been greater. In their work, “Ethical Responsibilities for Companies That Process Personal Data”, McCoy et al. (2023) correct...

Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...) clefts.Methods Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.Results Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).Conclusions Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent. (shrink)

Background: A growing literature has raised—skeptically—the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against the background of a genomic screening project where we participated as embedded, real-time ELSI researchers and observers, from its initial design through its conclusion.Methods: As part (...) of the ELSI study design, the project included an ongoing reflexive ethnography in which the authors studied the process of its design and implementation. The authors were true participant observers, serving as members of various task-oriented groups while recording meetings and other events for ongoing qualitative analysis. We also conducted and analyzed interviews of multiple participants at the conclusion of the project.Results: Our real-time ELSI initiative had a mixed record of successes and challenges. If we define success as ELSI researchers having had an opportunity to participate fully in the project and to make the ELSI perspective heard, then our assessment is largely positive. If, however, we define successes as instances where real-time ELSI contributions changed the direction of the genomic or public health aspects of the GeneScreen project or, after careful deliberation, confirmed the appropriateness of the status quo, then we can identify only a few examples. While we had a seat at the table, we were, for the most part, tolerated guests.Conclusions: We conclude that there are significant barriers to real-time ELSI influence. The difficulty does not reside in any intended exclusion of an ELSI perspective, but in factors endemic to genomic research, including knowledge disparities, epistemological biases, and the pressures of time and money. (shrink)

Anti-selection occurs when information asymmetry exists between insurers and applicants. When an applicant knows they are at high risk of loss, but the insurer does not, the applicant may try to use this knowledge differential to secure insurance at a lower premium that does not match risk.

Congress passed the Genetic Information Nondiscrimination Act of 2008 in order to remove a perceived barrier to clinical genetic testing. By banning health insurance companies and employers from discriminating against an individual based on his or her genetic information, legislators hoped that patients would be encouraged to seek genetic testing that could improve health outcomes and provide opportunities for preventive measures. Their explicit legislative goal was to fully protect the public from discrimination and allay their concerns about the potential for (...) discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.However, GINA left a number of issues unresolved, most notably failing to define the concept of disease manifestation. GINA was structured such that it only provides protection against misuse of genetic information up until the point when an individual's disease has manifested. It protects an individual with a genetic predisposition for a disease, but not an individual actively suffering from that disease. (shrink)

Between 1869 and 1879, the communal Christian group the Oneida Community undertook a pioneering eugenics experiment called “stirpiculture” in upstate New York. Stirpiculture resulted in the planned conception, birth, and communal rearing of fifty-eight children, bred from selected members of the Oneida Community. This article concerns how the Oneida Community's unique approach to religion and science provided the framework for the creation, process, and eventual dissolution of the stirpiculture experiment. The work seeks to expand current understanding of the early history (...) of eugenics in the United States by placing its practice more than two decades earlier than is generally considered. Additionally, this article situates the Community's leader John Humphrey Noyes as an early eugenics and social scientific thinker. Finally, the treatment provides a case study for the transitional period in mid to late nineteenth century America whereby scientific modes of epistemology were accommodated within or supplanted by theological worldviews. (shrink)

Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...

In their paper, Chapman and colleagues (2025) argue how key regulations and “data-centric” research practices neglect to address potential group harms. They utilize the case of genomic research on...

We began with the observation that language is often held to enact the world. We have examined several instances of this notion, beginning with a discussion of the folk etymology of certain words, moving through an example of Freud, to Morgenstern, Lettvin, and Stevens. The method shared by these examples assumes that words are literally saturated with meaning; that what appears arbitrary or senseless in them can be made to render up its sense and its motivation through a kind of (...) inspired analysis. Our intent has been to show how this principle of folk etymology lies behind some sophisticated creative thinking. In Freud, it is hypothesized to be a psychological mechanism of some depth. In Morgenstern and Lettvin, it forms the basis for a resonant poetic joke, while in Stevens it appears to have the same major status as the mythic principle of creation-through-language illustrated in our first examples from Egyptian mythology and from Genesis. Stevens, of course, uses the principle to create poetry, not religion; for as he says in section 5 of "The Man with the Blue Guitar": Poetry Exceeding music must take the placeOf empty heaven and its hymns . . . Samuel Jay Keyser, head of the department of linguistics and philosophy at the Massachusetts Institute of Technology and editor of Linguistic Inquiry, is the coauthor of English Stress: Its Form, Its Growth and Its Role in Verse and of Beginning English Grammar. Alan Prince, an assistant professor of linguistics at the University of Massachusetts at Amherst, has written on stress and linguistic rhythm and is currently working, with Keyser, on the poetry of Wallace Stevens. (shrink)

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)